Faith Drives A Father To Create A Test For Childhood Cancer

Elizabeth, Samuel, Bryan and Noah Shaw amid Texas bluebonnets on Easter Sunday. Samuel was conceived with in vitro fertilization so he would not suffer from the hereditary cancer that afflicted Noah.

Courtesy of Elizabeth Shaw

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Originally published on May 13, 2014 12:32 pm

When Bryan and Elizabeth Shaw learned that their son Noah had a potentially deadly eye cancer, like a lot of people, they turned to their religious faith to help sustain them. But faith is also impelling Bryan Shaw to create software to detect eye cancer in children as soon after birth as possible.

The Shaws are Christians, and their faith is extremely important to them. When they were at their bleakest, "Bryan would pull out the Psalms and say, 'This is how King David suffered in the Psalms, and we're going through this," says Elizabeth. "This is God's plan for our family, and we just have to walk through it and trust in God."

But their passionate faith in God was also a source of concern for Bryan Shaw. "What causes people's faith to be damaged," he told me, "is when bad things happen to them and they think, 'Oh, there can't be a God, because if there was, he wouldn't have done this bad thing to me.' "

There's no doubt that a bad thing happened to Shaw's family. At 4 months of age, Noah was diagnosed with a rare form of eye cancer called retinoblastoma. Children with the disease form tumors at the back of their eyeballs. Children like Noah with the inherited form of retinoblastoma start to form tumors before they're even born.

Bryan says his faith wasn't shaken by Noah's illness. "I believe there is no bad thing done to you," he says. "It may seem bad in the short term, it may seem bad in this life, but it's not bad. It happened for a reason. You may not figure it out in this life, but if you can, you're even more blessed."

But he worried that Noah might have trouble understanding that. "When he gets older and he can think for himself, I don't want him to get mad at God, or stop believing that there is a God," Bryan says. So he was determined to find ways to prevent that from happening. He hopes the early detection software will do the trick.

The technique has shown that it is possible to detect the signs of retinoblastoma as early as 12 days after birth. Bryan hopes to prove that such early detection will mean fewer children will lose an eye to the disease, as Noah did.

"I want my son to believe that what happened to him happened to him for a reason," says Shaw. "And if I can make good come from this bad stuff that happened to my son, and I can show him when he grows, I know it's going to strengthen his faith."

The Shaws were determined not to let another one of their children suffer from retinoblastoma. So to prevent that, they chose to have a second child using in vitro fertilization. That way they could screen the resulting embryos and only implant the ones that did not carry the damaged copy of the RB1 gene.

Some Christians are uncomfortable with this because it can mean discarding viable embryos. The Shaws continue to struggle with this dilemma, too, but favor the belief that God gave them a tool to prevent retinoblastoma.

In any event, baby Samuel won't face the health problems that afflicted his older brother.

This story was produced by Rebecca Davis.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

STEVE INSKEEP, HOST:

It's MORNING EDITION, from NPR News. I'm Steve Inskeep.

RENEE MONTAGNE, HOST:

And I'm Renee Montagne.

We've been hearing about how a scientist has been trying to help others after his own son was diagnosed with a rare cancer. Yesterday, we introduced you to Bryan Shaw, a chemist at Baylor University in Waco, Texas. Even before their infant son was diagnosed, Shaw and his wife were suspicious that something was wrong. It turned out that their son's baby pictures showed evidence of a cancer long before their doctors recognized it.

Today, as part of his series Joe's Big Idea, NPR's Joe Palca tells how those baby pictures may lead to an invention that will help save thousands of other children.

JOE PALCA, BYLINE: Noah Shaw is now five years old.

(SOUNDBITE OF A CHILD SINGING)

PALCA: Every six months, Bryan and Elizabeth Shaw come to Boston to see their son's cancer doctor, to find out if the tumors in his eye are under control or growing again.

ELIZABETH SHAW: Yeah, I might get a little nauseous before his one o'clock checkup, because at that time, we'll find out if his cancer is still stable or of it's not.

UNIDENTIFIED WOMAN: Going up.

PALCA: At the upcoming appointment, Noah's going to need eye drops, and Noah hates eye drops. So Bryan is doing a sales job on him.

BRYAN SHAW: When you're done getting drops, what are you going to get?

NOAH SHAW: Twix.

SHAW: That's right.

PALCA: Bryan and Elizabeth saw hints of their son's disease, a rare eye cancer called retinoblastoma, in flash pictures when Noah was just three months old - a strange, white glow in some of the pictures. At first, they thought it was a problem with the camera, like red eye, only white eye. A month later, a doctor saw that same glow when she did an eye exam, and told the young couple their baby boy had tumors at the back of both eyes. Bryan was devastated.

SHAW: The day he was diagnosed, that afternoon, I couldn't talk. I called up a help network and I said: Hi, my son has - my son. And the lady on the phone was, like, take your time.

PALCA: Finally, he got the words out.

SHAW: My son has cancer.

PALCA: My son has cancer. At first, all Bryan could think about was doing whatever it took to save his son's life. There were months of chemotherapy and radiation and ultimately surgery to remove Noah's right eye, to keep the cancer from spreading to his brain. But at some point during all of this, Bryan told me he started thinking more like the scientist he is. He wondered: What if the camera had been programmed with software that could recognize the white eye?

SHAW: If I would have had some software in telling me: Hey, go get this checked out, that would have sped up my son's diagnosis, and the tumors would have been just a little bit smaller when we got to them. There might have been fewer.

PALCA: And maybe Noah's eye could have been saved. But there was no software.

Now, for most of us, that would have been that. But Bryan, the inorganic chemist, figured: I can become a software designer.

SHAW: I was trained in this funny lab at Harvard called the Whitesides Lab, where we scoffed at specialization. If you were just an inorganic chemist, you weren't cool.

PALCA: To build the new software, Bryan needed to find the earliest instance of that white reflection in baby Noah's eyes. That would tell him just how early you could catch a sign of the disease. Luckily, his wife took a lot of pictures of their baby.

SHAW: And I told my wife: Give me all your pictures. Give me all the pictures. I need all the pictures.

PALCA: So Bryan sat at his laptop...

SHAW: I was in my office.

PALCA: ...and started sifting through the photographs. Turns out, there were thousands.

SHAW: How many people take 9,000 pictures of their family, and then go back one day and look at every single one in chronological order?

(LAUGHTER)

PALCA: Noah, as a newborn, Bryan and Noah curled up together on a couch, Noah with a patch where his right eye used to be.

SHAW: When I was looking at all the photos, I cried. I don't mind crying when nobody's watching. Because I relived the whole - I just relived everything. What really hit me was my face looking at my face in some of the pictures, holding my son, and boy, I looked miserable. It's funny, because you don't feel so miserable. It's like - I've never been in combat, but I think it would be like this. You're just so hopped up that you really never have time to sit down and be sad. But when you look back at pictures of yourself going through that, you can see it on your face. You were pretty messed up.

PALCA: After poring over these pictures for weeks, Bryan found what he was looking for.

SHAW: We had white-eye showing up in pictures at 12 days old.

PALCA: Twelve days. Months before the doctors diagnosed his cancer, these photos showed the tumors were there and growing when Noah was practically a newborn.

SHAW: I mean, he still had the nasty thing hanging from his belly button.

PALCA: Bryan is convinced if he can build this software, it'll speed up diagnoses and save lives and sight.

SHAW: I would like this application, this software to be free and I would want it anywhere a picture of a kid is - your laptop computer, your Flickr account, your Facebook account, your phone, your camera. I don't care where.

PALCA: When you hear Bryan speak this way you think: There's a man on a mission. Get out of my way, 'cause here I come.

So Bryan has rounded up some computer science colleagues at Baylor, and they've come up with a prototype of the software. But it's a long way before it will be ready for the kind of distribution Bryan's hoping for, because there are lots of problems to solve.

Proving it works for one thing. He'll need parents of kids with retinoblastoma to donate all their baby pictures so he can test his software on those and see how it does finding their cancers. And he'll need pictures of healthy kids to prove software won't accidentally say they have cancer, when they don't.

PALCA: You said it. Imagine thousands of terrified parents pounding on doctors' doors because their cameras told them their kid might have cancer. Bryan thinks he can make software that will keep this from happening. But Noah's illness has made Bryan see the world differently

SHAW: I've lived through this, you know. An ophthalmologist can say, oh, they'll be too many false positives, this will just annoy too many parents. Well, OK. You might get annoyed. But if I can save, let's see, 4,000 kids die a year from it, 8,000 get it, and almost all of them, whether you survive or die, you're going to have compromised vision, if this software can improve their life, well, maybe we can overlook the little bit that it might inconvenience some of the other families, I don't know.

PALCA: There's another reason Bryan so passionately wants this software project to succeed, a reason that's more important really than all the rest.

SHAW: Because I'm a Christian, and if I can make good come from this bad stuff that happened to my son, and I can show him when he grows up, what happened to you, son, isn't as bad as it might seem.

PALCA: Because your disease, Noah, led to an invention that saves other kids' lives.

SHAW: I know it's going to strengthen his faith, because it helped other people out.

No money there.

SHAW: I swing.

SHAW: Yeah. You want to go sit in the chair?

PALCA: Noah and his Mom and Dad have arrived at Dr. Shizuo Mukai's office at the Massachusetts Eye and Ear Infirmary and now they're waiting for the doctor. It's been 20 minutes and counting.

(SOUNDBITE OF WAITING ROOM CHATTER)

PALCA: Noah's gotten his eye drops, gotten his Twix, and now Noah is getting antsy.

SHAW: I want to sing a song.

PALCA: To help pass the time, we offer to record Noah singing a song.

SHAW: How about Bob Marley? What's your favorite Bob Marley song?

SHAW: "Three Little Birds." (Singing) Don't worry about a thing.

PALCA: As they sing together, Bryan's eyes well up.

SHAW: (Singing) Cause every little thing is going to be all right.

SHAW: That's right, buddy.

PALCA: Finally, Dr. Mukai arrives to do the exam that will tell whether Noah's cancer is back.

DR. SHIZUO MUKAI: Do you want to scoot up there?

PALCA: He says Noah in a chair...

MUKAI: Can I take a little peak?

PALCA: ...and peers into his eye.

MUKAI: Yeah. It looks great.

SHAW: Really?

MUKAI: So, yeah, the back looks fine.

SHAW: Oh, great.

MUKAI: The tumors have regressed nicely.

SHAW: It's a huge relief to hear that his cancer is still regressed, and we're happy about that.

PALCA: So, Noah is in the clear. Now, what happens if Bryan's early detection system for retinoblastoma never pans out? Well, Bryan says he can handle that.

SHAW: But you know what? It's such a good idea, that I believe even if I don't do it, if I just get the word out, somebody else will do it. That's really all that matters.

(LAUGHTER)

PALCA: Joe Palca, NPR News.

(SOUNDBITE OF SONG, "THREE LITTLE BIRDS")

BOB MARLEY: (Singing) Don't worry about a thing, 'cause every little thing gonna be all right. Singing don't worry about a thing, 'cause every little thing gonna be all right.